Saturday, January 15, 2011

Three weeks later we are finally settling into what the doctors told me would be ‘our normal’.We are perfecting a better, more familiar routine but still find Wrenn a mystery as we study her habits, wants and needs. Sometimes I can’t tell if she’s just fussing because she’s a baby, looking for attention, having withdrawls from the narcotics or has a real medical need.This situation continues to stress me out as we translate each cry. The hardest part is comforting her at night.Many nurses would pat her butt to help coax her back to sleep; knowing when she needs to fall asleep on her own is hard to pinpoint when you’re not sure if she’s having gas pains, intestinal issues, or just plain hungry.Because she feeds from a G-tube, she can’t refuse a bottle.It’s so difficult and frustrating at times, especially when we want to give her the world and make every thing better as she continues her recovery at home.We are often left wondering if certain types of attention is starting up those bad habits we’ll be trying to break several months from now. (Maybe I need to contact Nanny 911).

I’ve been very careful tending to Tanner’s needs but also include him in her care as much as possible.He retrieves her toys, throws away diapers, turns on and off all her medical equipment, places the nebulizer mask on her face and loves pushing a few medications through her g-tube button.I want him to feel a part of her care and realize that he’s part of her life and not just watching us do everything that needs to be done without his participation.I am impressed at his kindness and he seems to be adjusting just fine to his little sister.At night it feels awesome congregating in the living room together.We had spent so many evenings apart as a family, which was very difficult.Leaving one child in the hospital to go home and tuck another one in bed kept me on a terrible emotional roller coaster.I’m hoping those days are gone forever! Both my babies are finally where they belong: under one roof with mommy and daddy!

Wrenn continues to watch Tanner’s every move.He truly never stops and will probably be her biggest inspiration in how quickly she learns to crawl and walk. This week in therapy she started moving her legs up underneath her butt, in preparation for crawling.I am amazed each week how much stronger she gets and can’t wait for her to catch up.She will be chasing Tanner around the house before long and I know, holding her own!Spending eight straight months in a hospital bed made her legs weak and so we do exercises at home to help build those muscles.So far she is progressing and showing interest in gaining more independence.

As far as her health goes, she will have another bronc next week.The one she had just after Christmas didn’t result in large enough samples to show if there was any rejection, so they are going to try again.If all looks good we won’t have another one until March.

One test showed a small bacterial infection in her lungs.Treatment is inhaling medication through a nebulizer twice a day.We will continue these treatments for a month, just to be safe.Luckily she enjoys the mask and does great.I also give her chest PD three times a day to help open all areas of her lungs; this is light pounding on several pinpointed areas to keep secretions from settling into the lungs that might cause poor oxygenation.

Right now we do labs once a week, clinic once a week and therapy twice a week.The days go so fast that I’m drained by mid-afternoon.I literally go from one child to the next, making sure both kids get equal attention.Unfortunately my own needs suffer.I eat when I think about it or if someone else makes the meal.I have to admit, protein shakes are my best friend right now.I sleep, but lightly, because I’m always looking to keep Wrenn comfortable and on time with her medications and treatments.The good thing about our situation is that I’m an extremely organized person. God must’ve thought I could do all this and so far I’ve proven that I can.As I hear about other children preparing for liver transplants or even lung transplants I’m thankful that I’m past that stage.The waiting was the hardest part.I wouldn’t want to go back in time at all.Once through was enough for me!

I thank God every single day for my two beautiful kids.I continue to ask for strength in getting everything done on a daily basis.I ask Him for patience, guidance and more time.I pray for the other families going through similar situations.

Wrenn is doing much better on taking food via mouth.She likes a variety of baby food and doesn’t gag at the sight of her binky.She is playing with her feet, sucking her fingers and chuckling out loud.Her hair has lightened up a bit, appears to be curly and is coming in much faster now that she’s home.She is 27 inches long and weighs 16 pounds 2 ounces.She loves her swing, vibrating chair, being held and lying on the floor with Tanner.She clings to her bunny and puppy each night while sleeping.What I love most about her is her smile.Across the room you can smile and she always smiles back.She loves people and even smiles behind her mask when we enter the hospital.

For an hour a day, Wrenn wears an eye patch to help align her right eye.After coming out of the paralytic drug her right eye had become weak.Placing a patch over her eye will help strengthen the muscles.We have an eye appointment next week and will know if she needs surgery or more time with the patch.

Like you, I look back at some of the photos on here and can’t believe how far Wrenn has come.Tanner was just a little over 2 years old when Wrenn was born and now he’s 3.A lot changes from 2-3.It’s still so hard to believe that we’ve been doing this since April 14th.

2
comments:

Sounds really tough, but you're doing an amazing job! It's great to hear how she's getting on at home.

Oh, and God didn't *think* you could do this, God KNOWS you can do this. You're doing an awesome job, Nicole!

Anonymous
said...

So glad to hear from you! I am so thankful that Wrenn has you & Jason, because I agree with the previous post, God knew you could do it. She is one lucky little girl and together you four are a wonderful family. She is beautiful and before you know it, all of this will be in the past and Jason will be scowling at the boys coming to see your beautiful daughter...lol Take care and please keep the updates coming she has become a part of all our lives. We love you all and may God Bless your journey always.

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.